Monday, July 29, 2013

Remembering

Conner turned 6 last week. It is so hard to believe that a little more than 6 years has gone by since we moved to Michigan and our lives changed forever. There have been so many struggles and sadness in the last 6 years, but a ton of triumphs too.

A friend said to me recently that she didn't realize that Conner was born so early until she read something on Facebook. I thought in case anyone is just joining our story now, I would give a little bit of our story. I thought that I hadn't really thought about the details in a few years and so many things I can't even remember any more. While it's good that some of the memories are fading, it's also really good to remember the experiences that have made us the people and parents that we are.

So, here it goes. We were expecting twins, due November 2007. We were a little nervous but excited. We had been trying to have kids for a few years, been to lots of doctors and had lots of tests done. Early on in my pregnancy, I had some trouble (maybe at about 5-6 weeks) and I thought (and the doctor thought) I was having a miscarriage. David was out of town and I was hysterical. The next day, we found out we were having twins (we originally thought it was just one baby) and I had a clot in my uterus. The doctor said this wasn't that uncommon with twins and that I needed to take it easy for a few weeks. Things got back to normal and everything was going fine. I don't really remember being sick or feeling bad at all, not even tired. My doctor was great and everything was back on track.

We moved to Michigan on July 1, 2007. I had to find a new doctor and get situated here but we figured we had a few months to get acquainted with a new doctor and hospital. I had not been feeling well right before then (20 weeks) and mentioned to the doctor. She said it was normal to be having these feelings since I was pregnant with twins. She did not examine me at all, just checked heartbeats. She did not want to do an ultrasound but I asked for one. She agreed but made me wait until I could get in to the hospital (instead of in the office). I had to wait one week to have the ultrasound. When we got there, we had no idea what was about to happen. It was bad.

The ultrasound tech went to get a doctor and I immediately knew something was wrong. The doctor had no bedside manner and was very pessimistic. He said the boys would be born right away, they would not survive and that we should get a camera to take pictures because this would be our only opportunity. He said there was nothing that could be done. We didn't even have names picked out. I was taken to the OB triage area where I had a resident examine me and it was horrible. By the time I made it up to the Labor and Delivery area, I was already dilated more (I think it was 2-3 cm) and my water was broke (probably had been for over a week). My head was lowered below my feet and I stayed that way. Things calmed down and I was put on antibiotics. They told us stories of people who had stayed been in my same position and made it many more weeks. At this point, I was just 22 weeks along. They said if we could get to 22 weeks and 5 days, I could get the steroid shots for the lung development of the boys. We had a few scares before that, but we made it to the steroid shots and got both of them 24 hours apart.

After a week, I ended up with an infection and ended up having to have a c-section. I didn't feel very hopeful at the time. I felt very detached from the whole situation (like an out of body experience). The boys were born in the middle of the night on July 25. Braedon cried when he was born. Conner had to be resuscitated. Both boys had to be intubated immediately. I don't remember even seeing them. They were taken away immediately by a very wonderful nurse practitioner and doctor.

The whole experience is such a distant memory. Thinking about it now is strange. But I want to remember what I went through. I did feel very strong at the time. I don't really feel like that any more. Going through what we did was a life changing event. And it didn't end there. It continued for 4 months in the NICU. That is where we spent every day, all day. The nurses became friends. They were our only contact with the outside world. We didn't have many visitors, we just sat there and hoped for the best.

Conner weighed 1 lb, 5 oz and was 12 inches long. He had complications. He had an infection. He had a PDA (hole in the heart) that would not close on its own so he had to have surgery on his heart at 2 weeks old. He had a IVH (bleed in his brain) that would most definitely affect him for the rest of his life. He had crappy lungs. He never pooped on his own and the doctors thought he had NEC (a bad intestinal problem) so he had to have surgery on his intestines at just a few weeks old. He had ROP (retinopathy of prematurity - an eye disease) and had to have surgery twice. He was sick. He had a breathing tube in his airway for 5 or 6 weeks. He was teeny and needed steroids so he wasn't really growing. It was a really long few months for him. By the time he was ready to come home, he was 5 lbs, 5 oz. Still small, but mighty. He came home with oxygen and a monitor but he was tough.

Conner after he was born




Braedon weighed 1 lb, 3 oz and was also 12 inches long. He had complications, but different from Conner's and different from what I expected. He had a cleft palate like me except mine is of the soft palate. He had a PDA but was too ill to do the surgery. His lungs were so so bad that he ended up on the oscillator (a different kind of ventilator). The doctors didn't think he would survive that but he did. He ended up with NEC but was too sick to do surgery and then had a pulmonary hemorrhage where blood was getting in to his lungs. It was torture. His eyes were still fused shut until the day before he passed away when he was 2 weeks old. We got to hold him for the first time as he passed away. He was a sweet little boy with light brown/blond hair and blue eyes. He was tough too, but the odds were so stacked against him. Some have said that it is easier to lose a baby when they are so small, before you know their personality. I disagree. I wish I knew what his personality was like. I wish Conner had a chance to be with his brother for at least a moment. I wish that we would have a chance to see them together. I know Conner's life would be so different if he had his brother with him. I wish that I had the chance to know him before we lost him. Losing a child is losing a child no matter how old they are. It is hard. It affects your whole life and you never forget and you never get over it.

Braedon at about 1 week old
So that is the story in a nutshell. It's an experience that seems surreal, like there is no way that happened to us. Conner was given a very different prognosis than what is reality. We didn't know if Conner would ever walk or talk or play or go to school. We worried about everything for the first few years of his life because we had to. At six years old, things have not been easy, but Conner is amazing and still tough and mighty. We want him to have an easy life free from struggles and pain. He has had enough of that already. We want him to have happiness, same as any other parent.

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